Phillips Family support fund.

Seeing my children hooked to machines or in ahospital is an all to familiar sight. Everyday is a constant struggle for my children and its heartbreaking. We were struggling before covid and right now 45583208_1582070860353463_r.jpegeven more.
     On June 24th 2016 we were blessed with Bridgett and Kylo. Before birth we knew we were into some though times with Kylo having ventricularmedley of 3 ventricles in his brain. Which means he has large fluid pockets in his brain as well as a few respiratory problems. 45583208_1582071221877535_r.jpeg      This caused his head to grow large and he had the wear a helmet 23 hours a day for 8 months to help shape his head properly. He did everything in his helmet. Everything! For the most part he really didnt mind it. We had a few scares and he had a few visits in the hospital including 2 times he was Bayflighted and once he was transferred to All Children's so they could treat him. About 2 years ago we got the news he can take off his helmet and his fluid is stable. We would just need to monitor it every 6 months.
45583208_1582071527405079_r.jpeg45583208_1582071553871968_r.jpeg45583208_1582071598110342_r.jpeg45583208_1582071621187093_r.jpeg45583208_1582071866344583_r.jpeg      We thought all of our troubles were over. We were very wrong.
       Shortly following our daughter started to regress in milestones with her developement. It was 4 months of crying all day and night with us wondering what is happening. We thought she had epilepsy and that cause the regression. We tried everything.45583208_1582072218239557_r.jpeg45583208_1582072246946393_r.jpeg       Both have Therapy, doctor appointments, specialists, and so much more not to mention we didn't know what was happening with Bridgett. 45583208_1582072476632018_r.jpeg       Then it happened. We got the official diagnoses of Rett Syndrome. We were devastated. We looked into many disorders and this was one of the more scary neurological disorders. Less than 1000 people diagnosed a year mostly being women with no cure. Bridgett has already experienced the same symptoms as Parkinson disease, cerebral palsy, epilepsy and autism in just one. Bridgett has a lot of seizure activity and suffers from both Focal and Absent seizures. Asthma, GI problems, can not voluntarily move limbs with involuntary movements(hand wringing, kicking, pulling hair, flailing arms, and thumb biting), shaking spells, tremors, anxiety, can't walk or talk, sleep apnea, dystonia, and the list goes on.45583208_1582072791478690_r.jpeg45583208_1582072815904234_r.jpeg45583208_1582072870200691_r.jpeg       We are in and out of hospitals and doctors which has become really hard financially.  With my daughter needing 24 hour care and my son having difficulties as well we get behind on a bill and frequently have to barrow money that we simply can't pay back and have been falling into dept. 45583208_1582073159325962_r.jpeg45583208_1582073200935025_r.jpeg        We struggle as it is just having 4 kids and one working adult. Every time we have an emergency we fall behind. We are also missing out on being able to take Bridgett to Rett Clinics which can cost a lot. We need help. We have applied to many services which take time to help out families in need however they wait list is so long and we need help as fast as well can get it.


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Artie Phillips 
Sarasota, FL
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